December 2017 Update...

I know the blog is LONG overdue for a decent update.

This update will not be the full update that is needed though.  I haven't written up a GOOD update in almost two years now I think.

It's been a rough year.  Well, year and a half.   About 18 months ago we learned that our landlord at the house would not be renewing our lease.  She claimed that she needed the house to live in, but she rented it out again.  It was what it was though.

We couldn't find a place to take all 9 of us (at the time.)  We looked at several places we could have made work for all of us, but as soon as anyone found out how many of us there was, it was no...   We have been on a VA Housing list for awhile.  So we ended up moving from the house to camping out at  my Mom's.  Wasn't the best, but we made it work.

We came up on the housing list and managed to get a place, moved in on September 8th, the day before Bubba turned the big 9.  (He turned 9 on 9-9) ... LOL ...

I love this place.  LOVE IT.  It would be better if it had a bigger dining room and kitchen.  But I absolutely love it.  We all love it.  It's perfect for the six of us.

Cal is talking about moving out and moving in with his fiancee ...   she's back and forth here, which we don't mind.  Love seeing our granddaughters.  And our daughter in law.

Anyway .....

Mini Updates.. 

We'll start with Noah.

Noah is almost 16 years old.  I'm not sure what all I have mentioned lately.  He was diagnosed with Glaucoma now, and Aspergers, ADD & severe Anxiety ...  his kidneys are also getting worse.  I think they are relatively stable, but he's starting to spill more and more protein in his urine. He still spills a lot of blood when he is sick, too.  We keep a pretty good eye on it.

Also, he has pretty much stopped growing.  He's 5 foot even, and I'm happy he even hit that.   For a kid who wasn't supposed to live at ALL...

Big changes this year, he's been homeschooling for awhile ... like, since 4th grade, and he decided this year that he wanted to go the highschool and see what they had to offer.  So we did the next school day ...He's been attending since the day before Halloween and loving it. He's mostly in the Life Skills room when he is learning skills to be independent....

He went from being so tiny and not supposed to live to almost 16 years old!

Now a smallish update on Nathan. 

He is such a silly guy and soooooooooooo smart.  He might be non-verbal (or non-understandable 90% of the time) but he tries REALLY hard.  

He doesn't have any big new diagnoses but his hearing has gotten worse, he still refuses the hearing aids because they are "too loud" ...  he also went through the VPI clinic and his VPI isn't as bad as was thought, but it's definitely there.   He has to get another sleep study done and then we'll revisit if he should do surgery.  He also needs to get into a speech therapy consistently (He gets ST at school but the ST he was in outside of school was 6 weeks of therapy and then it was someone else's turn and you got put on the bottom of the waiting list again....)

Of course both he and Noah have significant muscle issues.  Neither of them can walk very long without getting really tired.  Noah will push through it, but Nathan gets so tired out so quickly it's hard.  And he still isn't really gaining weight... 

I am worried about him getting put on continuous feeds.  But if that's what's needed, that's what we'll do.  He is still just getting feeds in his g-tube at night.  

He also gets sick and loses weight quickly. He got taken off his HGH because they removed the diagnosis of Russell Silver Syndrome, they don't think he has that anymore.  They are absolutely certain that he has some sort of genetic issue, but they just haven't found it yet.  

He's doing really good in school .. this year is remarkably different and I think it's because his best friend Rylee is in his class helping him out again.  He adores her.  He's also on anxiety meds and he's not freaking out in the morning anymore, which is AMAZING. 

The most important thing is that he has been hospital stay free for TWO AND A HALF YEARS!!!  That's unheard of with him!  It's AMAZING!!!!!!! 

From 3lbs 4oz at birth to 10 and a half years old! 

That's about it for now until I can really sit down and write up the notes from their doctor appointments... 

Spring Updates

Noah turned FOURTEEN years old on February 1st (2016).  It's crazy.  Sometimes when I sit there and think about it - this is the same baby that I was told wouldn't live - period.  Not only was I told that, had that fear they were right - but also - he started life at the weight of only 1lb 12oz!   It's CRAZY.  Here he is - 14!! 

As of today (March 29th) ...  Noah has some stuff going on.  He is 2 years into having those braces!  He has another year with them (at least).  But his teeth are looking AMAZING!  And that tooth that was growing horizontally, is finally starting to come down where they can pull it down with the orthodontics into place! (WHEW!)

Also, we are a little more worried about his kidneys right now.  When he saw the nephrologist in September (about 6 months ago) … they ran some labs on him.  He had a really low level of Vitamin D.  So they wanted him on a strict Vitamin D schedule – from what I was told (over the phone) from the clinic was that he needed 500-600 iu’s a day and 2500 iu’s once a week.  Now, I found out recently that wasn’t the case at all.  He is supposed to be on 2000 iu’s a day, and was supposed to do 10,000 iu’s once a week.  (Slaps forehead.)  So we are getting new labs drawn this week and we’re going to change things based on those results.  Also at his appointment, he had a high level of blood in his urine and was a +1 on the protein.  Which isn’t good.  So I did a dip on him the other morning, and he was maxed out on the blood scale and then at a +1 again (instead of a trace) … anything over a trace isn’t good.  (A trace isn't even good.)  ::: deep sigh :::  So this week they are going to do a urinalysis on him too.  I’m supposed to do a dip on him (at home) every day though – if it is consistently up there – he’ll have to go in sooner than later.  I’m a worried Momma.  I am, can’t deny it. 

Okay – after a recent haircut and when he came out of the shower, his brother noticed he had stretch marks on his back.  Normally this wouldn’t really be a big deal.  But for this little kid who has had trouble growing, period… once he hit puberty hard – he has been growing A LOT.  He has a lot of stretch marks.  He has them around his upper arms, arm pit, shoulder/chest area.  He has them on his hips, his butt, his legs a bit.   These we have known about.  They aren’t tiny stretch marks either… they are some serious stretch marks.   So his brother noticed that Noah now has three pretty deep stretch marks horizontally on his back.  (He got a haircut and showered after to get the hair off him, otherwise he usually does it when I’m in bed for the night.) Not up and down, but horizontally across his back.  This struck me as odd.  Never seen stretch marks like that.  (thinking, how many times can I say stretch marks in one paragraph?)  Then there is also the issue of the fact that he has some gynecomastia.  If you don’t know what that is, it’s where boys breast tissue develops more like a girl’s would during puberty.  Which I noticed and wondered about before, but it’s gotten worse.  And Noah isn’t overweight. 

So we took him in, figuring he needs to get in to see the endocrinologist (who he has seen before but she felt she didn’t need to see him anymore – so we’d need a new referral.)  So we took him in and the doc looked at him, checked out our concerns, and told us he was going to make the referral.  Great.  But he said something that shocked and upset me a bit.  He said “Noah’s not going to get much bigger.”  He was 108lbs and 5 foot even.   I gave him an odd look.   He said “Noah is in the end stages of puberty already.”  Noah started getting little arm pit hairs when he was about 7 years old.  I would bring this up to doctors (back in WI) and usually just got shrugged off.  Noah he’s 14 and almost done growing?  He hasn’t grown in height much in the last year I think.  On Nov. 18, 2015 he was 107lbs and 15 and a half of an inch (probably had shoes on – or was at a different clinic)... but I have that in my book that I use for important info.   So in four months he hasn’t really gained height or weight.  So yeah.  I’m a little irritated that my worries about his early puberty weren’t really heard.  It kinda makes me sad.  I’m 5’3, and he’s shorter than I am, it just makes me sad.  Nathan is going to be around that too – probably shorter.  Boo.  Just….  BOO!

Meanwhile – with Nathan – who is going to be 9 next month – CRAZY!  This VPI surgery is still on the table.  Since the doc wanted to wait a year to give him a chance to grow and gain weight (because he was worried with Nathan’s tiny airway, he wouldn’t survive the VPI surgery.  He literally had said “if we do the surgery, I’m afraid it’ll kill him.”  So last time we saw the DR – there was talk again about this surgery – because he needs it.  It’s the only chance he has to be able to talk.  He works so hard at talking and trying to communicate with us, but with the VPI – it won’t get better unless he has the surgery.  Now, if he has the surgery, it is not a guarantee that it’ll fix his speech. But he has a better chance.  So the next step we needed to take was Nathan having a sleep study and he did.  On January 2^nd, and we got the results in early February. 

The results of Nathan's sleep study. To put it in perspective, Nathan is a very active sleeper. He spins around in his bed, his head could be at the normal spot, next thing you know he's done a one eighty and his head is where his feet were, he's constantly twisting and turning and all that all night long. During the sleep study, he did not move like normal. It took him a long time to fall asleep and he couldn't get comfortable because he was very aware of the wires and cords and everything - he was afraid to move and he falls asleep on his side, and didn't want to move on his side because of the wires and cords - so his movements were a lot less during the sleep study than "normal" .... So the results they got that night were as follows.

They want Apneas to be less than 1. Nathan's were around 8 to 9 per/hour. (which is funny, because that's what his Dad’s are at too)...

Nathan doesn't really STOP breathing, but his breathing gets very shallow. It's called Hypopnea. (Nathan’s Dad stops breathing)

His Apnea is classified as mild to moderate.

He also has Disruptive Sleep. She said he didn't wake up much - he slept 92% of the time after he fell asleep initially. He did have a lot of leg movement. She said they like it to be less than 5, and Nathan's isolated movements were around 10 and his repetitive movements (like a kick, kick, kick type thing) was at a 5.5.

So he definitely needs a CPAP machine. I know this isn't a big deal in the long run of issues, but it still sucks a lot for him. Compared to him almost dying last May, this is just a blip on the radar. 

We got his CPAP machine about a week ago.  They didn’t have a mask that fit him though.  He has a full face mask but it’s a little too big for him.  

  (Dad is super jealous of his machine too – Nathan has one that warms up the water and has a bunch of fun stuff.)

Just saying – things just don’t stop being added to Nathan’s pile of stuff to deal with. 

We’ve been making adjustments to the head gear for it to fit a little better.  For example, I put snaps in places – like – where it velcros to tighten on his head, because it can’t velcro properly where it’s supposed to because it’s longer then were it would normally be placed.  Also where it attaches to the mask, that is velcroed too and he would pull that apart in his sleep – so I added snaps to make it more secure.  Then today, I added something more to his gear, because he would slip the upper strap on his head and pull it down to pop his mask off, so I added material (with snaps) from the top strap that sits on the top of his head, to the one that sits at the bottom of his head.  Oye!  But we’re trying really hard to make it work.

So over the next few months we are going to be seeing all the specialists again.  So updates will come with all those fun appointments!  Joy to the World.... 

First Half of April's Feed Bag Art.

So April so far has been a slow feed month.  Nathan has been sick and was throwing up several nights.  We ended up stopping his feed for about a week.  We ended up getting it going again around Easter, but I started doing smaller feeds.  Instead of 3 boxes, I went back to doing two boxes.

So let me ask, does anyone else have issues with their kids getting nauseated EVERY SINGLE night, and/or vomiting from the feed?

So this is April 1 to April 15

End of March Feed Bag Art

Beginning of March Feed Bag Art